“Her iron is very high,” she said. “The liver is compromised.” Again the liver, not her liver. We were quiet, waiting for her to continue. “You’ve done her a real disservice by waiting this long to bring her to transplant.”
Dr. K’s comment struck me as an insurance policy against her own accountability. If, God forbid, things didn’t go well, we were the ones responsible; we’d exhausted Gracie’s liver with our dithering. I was furious. Blood-throbbing-in-the-temples, throw-furniture furious. I opened my mouth to say—Go take a look at the wrecked children sitting out front, someone has done them a disservice.
Many other docs had told us to wait, or not to come at all. Had warned us about the risks, the toxicity of chemo, the damage to a young child’s developing nervous system. At least one had said that survival rates were better for older children. All of them had agreed that transplant was a long, nasty business not for the faint of heart. Which Gracie wasn’t. But still, any rational person would think long and hard before buying a ticket for this train.
Beside me, I could feel Brian’s anger too.
“This was the most important decision we’ve ever had to make,” Brian said. “It took time.”
Dr. K gave a curt nod. “I know you want what’s best for her. I’m sorry if I offended you.” She didn’t argue; she had more class than that. She paused there, choosing her words. “Kids with weak livers have a hard time. You should just know that.”
We knew. Kids with weak livers could develop VOD, or veno-occlusive disease, in which the liver fails. Full stop. Effective immediately.
Dr. K moved into problem-solving mode. “The best course of action at this point is to begin intense chelation. We can do it intravenously here in the clinic. Gracie will need to be here eight to ten hours a day, every day, from now to Christmas. After that, we will reevaluate her liver to see if she is ready. How does that sound?”
Um.
“Will intravenous chelation cause her any pain?” Brian asked.
“No, we will give her a port or a central line so that when she comes for chelation they literally just attach her line to the tubing. No need to stick her anymore. It would just mean an extra month or two here in Durham.”
We weren’t in any rush. There was nothing to get home to unless we were going home with her. We agreed, thanked Dr. K, and gathered our things.
As we stepped into the elevator, we passed a bald child in a wheelchair staring blankly ahead, emptied out. I couldn’t discern the child’s age or tell if it was a boy or a girl. Another wraith child.
I really, truly, deeply wanted to leave this place and not come back.
Gracie stood between Brian and me, holding each of our hands, subdued. The novelty of a new place had worn off. As the glass elevator descended, she looked through the wall as the cheerful colors, the bright feather mobiles, the enormous fish tank blurred past. She had an air of suspicion; she hadn’t had to endure anything too painful today, but clearly this was a place filled with doctors and nurses.
“Are we coming here again?” she asked.
“Yes, sweetie, we’ll be here tomorrow,” Brian answered.
“What about the day after that?”
“Yes.”
“And the day after that?”
“Yes”
“And the day after that?”
This was her favorite conversational move, keep the ball in play indefinitely. But she also needed to know. Should we tell her she’d be coming here every day for at least the next six weeks or for months, maybe for years? In the lobby we sat down on a couch with Gracie squeezed between us.
Brian said, “This place is where we are going to come for a lot of days. This place is where you will have a transplant so that you won’t have to get blood anymore.”
She thought about this for a while.
“Can I watch movies when I am getting my transplant?”
“Yes,” I said. “You can watch as many movies as you want.”
“Can I watch Dora?”
“Yes.” Brian was stroking her hair. “Dora galore.”
“I hate Dora,” she said. Trick question, good sign.
“Can I eat candy?”
“Do you like candy?”
“Yes.”
“Then you can eat candy.”
“What if it is bad candy that I hate?”
“Then you don’t have to eat it.”
“You won’t make me eat it?”
“No, sweetie, we won’t make you eat bad candy that you hate.”
“OK.”
We didn’t add that eventually, because of the effects of chemo, she’d be unable to eat. She wasn’t interested in knowing that now.
Brian went to get the car while the kids and I stood in the cooling night air. It seemed like heaven out here, open sky, a cherry tree in the middle of the circular drive, a friendly valet captain who greeted each guest with “Hello, milady” or “Hello, my sir.” There was neither irony nor servitude in his tone, just warmth and formality. Best of all, at this particular moment, there were no sick children in sight.
Gracie ran Gabriel’s stroller in circles. They were a gleeful pair of released finches, flinging themselves in every direction. When we tried to load them into the car, it was open rebellion. Gracie kept shouting, “Wait, I’m not ready! I have to do my exercises!” This was reasonable, but I wanted to get home.
“Let’s go, sweetie,” I said.
Rather than get into her car seat, Gracie swung her legs in between the two front seats, resting her elbows on them for support, car gymnastics.
“I’m flying,” she said.
“Great, lovey, now get buckled.” I was trying to sound casual. If she sensed a demand, she’d be obliged to resist.
“No way,” she said. “I’m doing my special tricks!”
I should be savoring her “special tricks” and everything else about her. But I wanted to get home, to get in bed, to maybe, if we were lucky, stay awake long enough to watch a crappy movie. “Gracie, in your car seat now. One … two…”
She ignored me and began to swing her legs so high she could kick the roof of the car. She looked at me from the corner of her eye. “These are exercises.”
“Gracie,” Brian said, “your exercises are so important. Let’s get home where you have more room for exercising.”
She wavered. “Will you exercise with me?”
“I will, my love. We’ll exercise together till the cows come home.”
She got into her seat and settled down.
“Stop showing off,” I said to Brian. It drove me nuts how he made things with the kids look easy. How he made things with the kids be easy. He’d arrived late on the scene, but he was way out in front.
“I was here first, you know,” I said.
“I know you were. And I’m not trying to make you look bad.”
But he couldn’t help himself; he had generally good impulses. When Gracie whined for more chips or another video, Brian would ask if she knew what the fairies did with children who whine.
“What do they do, Daddy?” she would ask, in her regular voice.
“Nothing actually. Fairies love whining.”